Roadmap Information & Support Resources
Use the information and support resources provided to help with taking the next steps beyond receiving a rare diagnosis or continuing life without a diagnosis.
Rare diagnosis
Families living with rare conditions have usually had a long journey to find an answer, searching for more information about treatment, what the future will hold and possible impact for other family members [...]
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The process of trying to identify an underlying cause of signs and symptoms can be long and frustrating. Many children and adults remain without a diagnosis despite multiple assessments and investigations [...]
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